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02/28/2008 03:01 PM

I need advice

doubledelightjs
doubledelightjs  
Posts: 69
Member

Hello everyone! I am unsure what to do my husband wants me to have a third video EEG, where they drop me off of my medicine which causes me to have seizures. They put electrodes on my head and there is a camera videoing me so they can record the seizures. The first 2 video EEG's were unsuccessful because I didn't have any seizures the whole time I was in there (1)8 days & (2)5 days. I don't know if it was because there was so much medicine in my system or if it was because of anxiety, after the last time I was in for a video EEG I told myself I would never go through another one. But now my husband is really after me to have another one. I am debating on having an VNS. If any of you have experienced any of this please write me. Smile SoniaSmile
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02/29/2008 08:18 AM
Bronzey
Bronzey  
Posts: 152
Member

well i had to EEGs b4.. but even while i was on medicition they found activity going on in there.. so i dont know if it has anything to do with the medicine... do u have to be havin a seizure so they can pick it up on the EEG???

02/29/2008 03:38 PM
doubledelightjs
doubledelightjs  
Posts: 69
Member

Hello!

Yes they had a camera aimed at me so they could video me having the seizure and they had electrodes on my head so they could record the seizure. The doctor was trying to find out where my seizures are originating from so he will know if I am a candidate for surgery. I have wondered is surgery to stop seizures generally done when the seizures are caused from a tumor. I think mine are hormonal related, would brain surgery even help if it is hormonal related. If any of you know or have experienced this, please write and tell me. Sonia


04/05/2008 06:50 PM
gidget
gidget  
Posts: 64
Member

Hi Doubledelights! My name is Gidget and I just joined this support group today. I didn't know such a thing existed. I have been having seizures since I was 5 yrs. old, am now 46. I am not completely seizure free but a lot better than I was. With the question you had about the eeg's, I don't think there are many who do have a seizure while having the test. I have had so many of them I lost count and I don't think I ever had a seizure while having it. I had the one where you are admitted to the hospital, taken off your meds and are hooked up to the electrodes for a week. I only had 1 seizure during that test. But the test itself isn't bad, no pain, just uncomfortable with all those electrodes glued to your head for a week. I also had the vegas nerve stimulator put in about 8 years ago. I think it has helped me a great deal. I went 2 years seizure free. Now I may have a seizure every few months. It takes a while to get use to it but now I can't even tell when it goes off. If you want to know anything else about the test or stimulator just let me know. I will be glad to give you any info that I can on it. I told you earlier that I just joined so you will be the first one I send a hug to! Take care and God Bless. Gidget

04/05/2008 08:12 PM
doubledelightjs
doubledelightjs  
Posts: 69
Member

Hello Gidget,

First of all I want to say thanks for the hug, second I am glad you joined the epilepsy support group there are some amazing people in this support group Laughing I don't talk much to people because I have trouble thinking of the right words that I want to say, I would never talk this much at a support group that I have to attend but this way I can take my time and say everything that I want to. third thanks for writing to me and sharing your experiences with video EEGs, the worst part to me was the effects of being dropped off my meds so fast, the first one I had I was in the hospital for 8 days and the only sleep I got was on the 7th night (the only reason I slept that night was because the doctor had the nurse give me a sleeping pill), but the lack of sleep probably had alot to do with making me feel like I was loseing a grip on reality. You said you went 2 years seizure free, did you start driving at that time? I was seizure free for 7 years and I was finally able to drive & work, but then I started having seizures again 6 years ago and having to stop driving has really been hard. I am considering getting the VNS so any information you can give me about it would be greatly appreciated. Bye for now, Sonia


04/05/2008 09:14 PM
gidget
gidget  
Posts: 64
Member

First I wanted to thank you for the hug and the response you sent. I just started this today so you are the first I have talked to. Second, when I 17 I wanted to drive so bad. I got my permit and I was driving, I was at a stop sign and school was just getting out and a group of elementary kids started to cross the road. As I watched them a fear came over me that even with the aura I have what if I actually did have a seizure and did hurt someone. I would never forgive myself. So I didn't even try to get my license. Then later on I read in a magazine that insurance was so high that I couldn't afford to drive if I wanted to. That has been one of the hardest things for me about epilepsy, having to depend on someone else to take me everywhere I want to go. As far as the stimulator I don't know how much you know about it already so you can tell me what you do know and then I can tell you what you don't know or want to know. All I am going to say right now is that I am very thankful I have it. It can not only prevent seizures but if you are with someone who knows how to use the magnet they can also stop a seizure once it has started. I could keep on going with this letter, I stay on this computer a lot because I have problems sleeping. I just don't want you to get tired of me before we even get to know each other.Laughing Hope to hear from you soon, if I haven't bored you to death already!Unsure Take care & God bless Gidget

04/06/2008 08:50 PM
doubledelightjs
doubledelightjs  
Posts: 69
Member

Hi Gidget, Smile

I know what you mean, not driving is the hardest part for me to, I wanted to go shopping for some stuff today but My husband doesn't like shopping with me (because it takes me forever to decide what I want), so I don't like to ask him to take me, and I feel like a burden to him and to my parents, so I don't do alot, after church today I went to family dollar to get my 4 year old twins some summer clothes and I spent more than what I should have and my husband just goes on about how stuff from family dollar is cheaply made, well I didn't say anything, I just wanted to cry, I just wanted to get my daughter some dresses for church that fits & family dollar is only a couple of miles from our house so that is the only place I could get to. My neurologist told me that the VNS doesn't control seizures very often, it just reduces the # that you have, I think my neurologist would like me to get a VNS, they have tried most of the seizures for the type of seizures I have and I have been through 2 video EEGs so I think the neurologist feels a VNS is about all that is left until some new meds get approve by the FDA. Where do you keep your magnet so you have fast & easy access to it? Does the people you are with have a magnet also or do they use yours? You don't have to worry about me getting tired of you Blink because thats not going to happen, I can't begin to tell you how glad I am that I found this support group, everyone has been so nice to me & I feel so blessed to have you as a friend. Bye for now, Sonia


04/08/2008 08:31 PM
doubledelightjs
doubledelightjs  
Posts: 69
Member

Hi Gidget,

I just wanted to ask you about one of your earlier posts, You mentioned that you have had so many EEGs that you lost count, did you mean the video EEGs where you were in the hospital for a week, if so how many of those have you had, I had mentioned to you that the 2 video EEGs that I have had were really hard on me, I didn't know if it was so hard because of being dropped off of my medicine so fast, or because I didn't get hardly any sleep (if any), but I also have anxiety, I wasn't on medicine for anxiety those 2 times I was in the hospital for the video EEGs, I am on Lexapro now so if I was to go in the hopital for a 3rd video EEG maybe it wouldn't be as hard on me. How are you doing?

Talk to you later, bye for now, Sonia


04/09/2008 09:02 PM
gidget
gidget  
Posts: 64
Member

[size=4][/size]Hi Sonia Smile Sorry it took me a while to get back with you but I have spent the last 2 days in the dr.'s office and having test run, nothing to do with the seizures though. I've had it pretty rough since January. Concerning the eeg's, I have had 2 of the video eeg's. I didn't have much trouble with the withdrwal of my medicine. I was on tegretol at that time. I think that would depend on the type of meds you are taking as to how it effects you and how fast it is withdrawn. I have anxiety also, but at that time I was on no extra medication for it. The dr.s would tell me that because the medications I took for the seizures are anti-depressants they wanted to control the anxiety with the meds I was already on. I would say that the worst part of the video eeg for me was being bored to death and being a smoker. My anxiety didn't bother me much either, I think that was because I didn't know what was going on while in there so I didn't worry as much. I don't sleep very good either at home so the lack of sleep didn't bother me that much. The most aggravating thing about the test for me was the results. You go through all of this stuff and they don't know anymore about what's going on than before they done the test. What are they doing the test for, to find out more about the seizures or preparation for surgery or what? The most aggravating thing about the test for me was they didn't find anything from the test that they didn't already know. Even without medication I ended up only having 1 seizure through the entire week. That's what always happens to me. I will have seizures or symptoms of different things and then when I go to the dr. or have a test run those things don't happen. It almost seems like I'm lieing about it. I hope what I've told you has answered your questions. If you want to know anything else just let me know. I'm sending a hug along with this letter. Take care and God Bless. I hope to talk with you again. Gidget

04/10/2008 10:33 AM
doubledelightjs
doubledelightjs  
Posts: 69
Member

Hi Gidget,

Yes it was helpful, it was good to hear from you again, I hope you are doing better. I am at work right now (my lunch break is almost over)so I better go for now.

Talk to you later, Sonia

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